• Replies 4 replies
  • Subscribers 70 subscribers
  • Views 52 views
  • Users 0 members are here
Options
Related
Hints and tips
  • To quote someone's message, first select/highlight the relevant text, and then use the Quote button that appears
  • To "mention" someone, type @ followed by the start of the forum name, and choose from the list; that person will get a notification of being mentioned

Referred to autism assessment - lots of questions

jonliled

Hi everyone,

I'm 32 and was diagnosed with inattentive type ADHD a couple of years ago. I was referred to a psychotherapy assessment a few months ago to deal with my anxiety, but the team there referred me to do an autism assessment instead. Having spoken to several different healthcare professionals/therapists, I feel pretty certain that I'm on the spectrum, but I'm having a hard time processing it all.

When speaking to the psychotherapy team about my struggles, I felt certain autism plays a significant role, but when they asked me to fill in the screening form (AQ-50 I think) I had a really hard time relating it to my lived experience. The best way I can describe the mismatch is that I feel like I understand social cues and relationships, but it takes a lot of conscious effort/energy and I worry constantly that I'm either misunderstanding others, or that I'm being misunderstood myself. The questions in the screening form felt either far too specific (e.g. "I am not very good at remembering phone numbers.") or too vague (e.g. "I find it difficult to work out people’s intentions.") to relate to. I also didn't feel like they capture the anxiety and exhaustion - which is all I really care about if I'm honest. Can anyone else relate to this? 

It's been a few weeks since I was referred, but it has suddenly started feeling overwhelming. I'm not sure how long the NHS wait list for autism assessments is now, but my daughter had to wait ~18 months so I suspect it will be a while. I was told to start living with the assumption that I'm autistic, but I'm not really sure how... I'd really appreciate any perspectives or advice from other late diagnosed people! 

Parents

  • Good morning from America, jonliled!

    34 here with AuDHD as well. I was diagnosed ASD around 30. I also have a daughter (age 8) with Autism and one (age 5) without.

    Yeah, I get what you’re saying about there being some mismatches with standard Autism tests. Autism can present itself in a wide variety of ways. Some struggle with social cues, others do not. Some struggle with sensory input, others do not. It sounds as if you are very excellent at masking in social situations, so on the surface you may be able to handle social cues, but it is exhausting for you. It’s hard for an Autism screening test to determine that.

    If you have any particular questions or concerns that you would like to discuss, I’m totally open to diving a bit deeper. Best wishes!

  • in reply to profdanger

    Thanks for your reply! I would love to hear about your diagnosis/post diagnosis experience (if you are comfortable sharing)!

    You mentioned masking - did you find that becoming aware of it made it harder? Have you seen a change in yourself since your diagnosis?

    I feel like I know I need to change things in my life to mitigate the exhaustion, but I don't know where to begin... 

Reply
  • in reply to profdanger

    Thanks for your reply! I would love to hear about your diagnosis/post diagnosis experience (if you are comfortable sharing)!

    You mentioned masking - did you find that becoming aware of it made it harder? Have you seen a change in yourself since your diagnosis?

    I feel like I know I need to change things in my life to mitigate the exhaustion, but I don't know where to begin... 

Children
  • in reply to profdanger

    Thanks for such an in depth reply! 

    That's a good point about masking being potentially useful and tiring at the same time. It sounds like you have a pretty clear idea of how you mask and what it 'costs' you. How long did it take you to get to that point? Do you have any tips for spotting masking? It all feels quite muddled to me at the moment. 

  • in reply to jonliled

    Oh where to start!

    DIAGNOSIS/POST DIAGNOSIS EXPERIENCE
    So I first thought I might be Autistic because I was reading up on an infamous Autist and thought “Whoa, that sounds like me.” None of my family thought it fit me, but I asked my therapist if I could get a referral and she helped me out (I think she was curious about it). The assessment took a few hours and included an IQ test and I’m not sure what the assessment was exactly. When we met again, the psychiatrist said that I am borderline Autistic and if she were still using the term, she’d categorize me as Aspergers.
    Afterwards I was mostly relieved about the diagnosis because I felt it answered so many questions I had about myself, though it’s extremely common to feel a plethora of different emotions post-diagnosis. It took a long time for me to admit it to my friends and family, which I’m kind of glad I took my time letting everyone know. My wife was mostly against it at first and thought it was a waste of money, but I think having the official diagnosis helped to make her realize that it actually fit me. Since then her understanding of Autism has really reshaped.

    MASKING
    The main difference I have seen post-diagnosis in terms of masking is that now I am more aware of when and how I am masking. I find that there are lots of times when it is necessary to mask, but now I am able to lower the mask and be more myself when alone or with trusted people.
    Example: My main stim is to flap my hands when incredibly stressed or happy. Not doing so is a form of masking. I can choose to do it in front of people or alone, but if I hold it back I have to recognize that I am internalizing some amount of stress. I actually did it this morning before a meeting with a new client around my work’s receptionist because I trust that she understands why I do it.
    Another example: I stick my tongue out A LOT. When I socialize, I do it less, but it feels so much better - especially when I’m deep in thought - to stick out my tongue. Now that I’m aware that it is a stim, I can control when I do it so that I can better fit in or alternatively feel some relief.

    CHANGE THINGS
    One thing to keep in mind is that masking is not necessarily a terrible thing. Can it cause exhaustion? Yes. But it is also a response to the world that allows you to connect with others. While it’s good to be aware of your masking and find opportunities to lower it, it’s still important to keep it to some degree.